Wednesday 15 November 2017

Calm, joy and dinosaur mittens

My first moment of levity, most unexpectedly, involved my four year old daughter brandishing scissors and asking to do some cutting. It may seem odd that the sight of a toddler wielding scissors could bring me peace, yet the other night it did.

What started out as a large, blank, dark sheet of paper was, in the space of ten minutes, vigorously and methodically chopped into ever smaller and smaller snippets of paper. The hacking process only ceased when the tiny irregular scraps that remained were too small for her to hold.

Cutting done she looked down at the mountain of paper shards, smiled with mischief in her eyes and blew at them repeatedly like the storybook wolf who huffed and puffed to blow down the little piggy’s house of straw.

It made one hell of a mess, but (uncharacteristically) I smiled too (before later getting cross as I tried to instigate tidying up).

My smile was the result of seeing in her actions a parallel of my own. At the most basic level she had taken something big and broken it down to small irrelevancies, much in the mould of chunking up the insurmountable, proverbial elephant into bitesize chunks.

Since I last wrote I have been able to move forwards from my intense fear and doubt.

For me, the act of writing out what is circling in my head allows me to break down the component thoughts into rational fragments that can be processed. Once written out openly those big thoughts and questions lose their power over me, and once sent out into the world at the click of the button, they are shared and spread…much like those little paper snippings that covered my kitchen floor.

With the fear shared and therefore reduced I have felt unexpectedly light. Free and light. I have felt that ‘devil may care’ and ‘nothing to lose’ sense of urgency to accomplish whatever I fancy, create and savour positive memories and have felt increasingly attuned to the joy all around me.

As many of your will know, getting kids to put coats and shoes on to exit the house in a timely manner is normally a chore, scarves and gloves add to the complexity, which is usually a cause of great stress and frustration. But I could not have been more thrilled by the chilly winds earlier this week.

My son (grudgingly) donned in a ridiculous robot woolly hat complete with antennae, accompanied
by dinosaur mittens that feature eyes and spikes. His little dinosaur mittens hands then roared at each other in innocent play for a full 5 minutes in ever greater volume and vehemence on the streets of Shrewsbury, it made me wish for eyes and spikes on my own gloves. For what simpler joy could there be in life than to have roaring dinosaur mittens?!

In reflecting on and noting such simple joys I considered titling this post, Ode to Joy, but that caption would put me in competition with Beethoven and Schiller, intellectual heavyweights whose genius feels somewhat at odds with dinosaur mittens.

Beyond those dinosaur mittens I have been lucky enough to enjoy some fantastic moments of levity; I have revelled in getting glammed up for a night of carousing and dancing with my husband, sister and many wonderful friends. How rarely these days does when get to drag out a ball gown (or several), try them all on with, drink champagne whilst getting ready with ones sister, and eventually dance til the wee hours with my husband and friends.

A further source of elation, was that prior to my partying on Saturday night I somehow managed (genuinely not sure how) to smash my Park Run PB by a further 40 seconds, taking me down to 22.21. This does of course beg the question of what I have been doing these last few months, but I will credit my PT Ben Booth who has been helping me crank up my fitness lately along with a genuine ‘nothing to lose, won’t be doing this for a while’ attitude.


And so today is my 35th birthday. My bag is packed, the kids are up and I’m off to hospital. Thank you for all your lovely messages of celebration and support and I will see you on the other (hopefully stoma-free) side.

Wednesday 8 November 2017

The cloak of invincibility

I no longer wear the cloak of invincibility; that imperceptible and invisible cape that is unknowingly
draped around your shoulders in your teenage years and twenties as you severe the bonds of parental responsibility and seek greater independence.

This unseen mantle, devoid of weight and substance (although I like to think mine was fashioned from crimson velvet and trimmed with satin) subconsciously permits and encourages magical feats of derring-do. You can leap off bridges, saved only from the crocodile infested rapids below by an elasticated cord, (the provenance of which you are unlikely to have checked with any knowledge or concern). It allows you to jump out of aeroplanes, dance until dawn in a state that can only loosely be described as ‘consciousness,’ and complete all manner of adventurous and adrenaline-fuelled feats without even a backwards glace.

It is, after all, your life. You are free to make your own choices, and so you do.

Unfortunately, with the arrival of children, or indeed the existence of any other parties who are dependent on you (pets obviously included), you suddenly become consciously aware of the existence of this cape.

In this changed state, you MAY choose to don the ethereal cloak and rejoice in its superpowers every now and then, but your perception of risk is immeasurably and irrevocably altered. Never again is it just ‘your life.’ It may be your body and your choice, but your rational assessment of consequences and risk are different.

It is therefore with incredibly mixed feelings that I prepare for major abdominal surgery. I have never before had the opportunity to ‘prepare’ for surgery. To pack a bag. To ensure I am fit and well. To rationally consider potential outcomes and to weigh up risks and benefits. It is a terrifying prospect, fraught with conflict and doubt.

If the onset of parenthood was insufficient to cause me to fully set aside my illusions of immortality and pack my cloak away in a trunk forever, then the events of this last year (cancer, surgery, etc) have taken my beloved cape and shredded it beyond recognition. In certain moments of great pain I have never felt more mortal and fallible and closer to death.

It is now just over a year since those seemingly innocuous gut spasms transpired to be a genuinely life-threatening bowel obstruction caused by cancer. October 23rd is forever etched onto my memory for all the wrong reasons. Yet on that date, the choice between almost certain death and potentially life-saving surgery was a no brainer. No questions to ask. Except ‘where do I sign?’

Since then the conveyor belt of diagnosis, chemotherapy treatment, colorectal appointments has felt obvious and similarly clear-cut.  The potential upsides offered by unpleasant treatment weighed against almost inevitable disease progression have presented a similar ‘choice.’ Perhaps for some, in different circumstances there is a ‘choice’, but it never felt like one to me. As a former employee of the frequently maligned pharmaceutical industry, rationality and knowledge kicked in. I said yes to everything.

But this surgery feels different. In theory, this surgery is the next logical step, the step I have been pushing for and wanting. But now I have a date I’m not so sure.

This surgery is not a life or death decision. It is an opportunity to put things back where they belong, to reconnect the hosepipes of my intestines and put them back in my stomach. If all goes well, no more stoma.

Written like that it sounds simple. Obviously, it’s not.

And, as any gardener who has had experience of connecting hosepipes to dodgy outdoor taps, and of joining hosepipe to hosepipe extension will testify, issues and leakages are not unexpected. The situation is made even more complex by the lack of ‘Hozelock’ click and lock products for the digestive tract.

So, I am left feeling conflicted. Deeply conflicted.

At a selfish personal level, of course I want the surgery to reverse my stoma. This past year that I have spent with a colostomy bag has been fine. ‘Fine’ I repeat through tight lips and clenched teeth. Could I live with it forever? Absolutely. Does is stop me doing anything? No. Is it an inconvenience? Yes, it is and given the chance of life without it, of course it’s worth a chance.

However, this brings me back to my beloved red cloak. I know it doesn’t work any more. You might argue that it never did, but it used to have the most phenomenal placebo effect, and I miss that.

If it was just about me, it would be easy to say yes. But my life is not just ‘me’ anymore. I worry about what I would miss out on should, God forbid, the unthinkable happen. I am under no illusions that this is a complex operation and that there are risks involved.

Most of the consequences I can deal with, or at least I think I can. The digestive tract is incredibly sensitive, it doesn’t like being handled, or touched, or chopped about, or sewn. It is not hosepipe. It may rebel against being ‘reconnected,’ with leaking and all other manner of painful side effects, but I feel like I could live with that.

At a pragmatic level, with my inner pessimistic hat on, I may find that I am swapping a plastic bag stuck permanently to my abdomen for the adult version of my toddler’s nappy. There would doubtless be a degree of indignity in this, but this too I think I could live with. Hell, it might even make potty training the younger one more entertaining if Mummy is also trying to get back out of nappies!

Joking aside, the key word in all of this is ‘live.’ For the first time really since my initial cancer diagnosis, I find I am afraid of death.

I think it’s not just the thought of death and of all I might miss out on, it’s that at some point down the line my children would become aware of this choice that I made. For this is a genuine choice. It is not a cosmetic procedure in the sense of a boob job or buttock enhancement, but it could be considered ‘unnecessary.’ This is ultimately about quality of life and vanity, not clinical need.

And that is the circle I am struggling to square.

Do I want to rid my bathroom forever of bags and adhesive pouches and the spray that removes glue from my increasingly sensitive skin that hasn’t been glue free for over a year? Of course. But do I want my husband to ever have to share an honest answer to the question ‘Why isn’t mummy here?’ No. That thought is more than I can bear.

I now suspect I am being far too honest in oversharing my inner thoughts and emotions. I am, after all, British. It is not in our nature to air such topics and our feelings quite so freely.

Yet, writing this makes sense to me, and sharing my writing makes sense to me. So I’ll continue.

Those that know me well know that if you ask me orally about this you’ll get the more traditional and false British upper lip treatment that tells you I am genuinely ok about all of this. I’m not. I think it’s probably ok not to be ok about this.

So that’s where I’m at. There are no answers today. There is no punchline to this blog post.

I have made a decision (which I could obviously unmake) to go ahead with the surgery next week. No one is pressuring me either way. It is still my choice. It’ll make my 35th birthday rather more memorable than it might otherwise have been, and hopefully it’ll be worth it in the long run.

The only concluding thought that I can offer is to tell you that somehow airing my fears like this feels like an unburdening, it feels like confirmation of the old adage that ‘a problem shared is a problem halved.’

The more I write the more I can rationalise everything and separate heart from head. It’s ok to be afraid, yet I also know rationally that there are thousands of people every day who go through surgery (cosmetic or otherwise) and the vast majority of them are fine, they too live, and hopefully so will I.